To those newly diagnosed! There is hope!

[38yroldmale]

I was diagnosed with Parkinson’s in Dec 2018. My form of Parkinson’s has a huge psychological element that many of you can relate to. It’s obvious because of how quickly I progressed while I was getting diagnosed . My Dad who was my best friend and business partner died unexpectedly in 2013, which destroyed me. I worry but never complain, so it festered in me and that’s when my PD started.

I am aware that Parkinson’s is many different diseases, so maybe the stuff I do won’t work for everybody but it could help you!

According to Dr Laura Michley, PD can be treated like Diabetes, except dopamine instead of insulin. I wish I would have know that when I was dx, especially at 38. You need to seriously consider memorizing the paper attached. It is the most important paper I’ve read with Parkinson’s.

I think I have stopped the progression , seriously. One of the reasons I know is because about a year ago, I basically stopped all my therapy’s for about 6 months. I got much worse during this time compared to the over 3 years before. My Parkinson’s started to move to my left side and my neurologist told me as much. I restarted my therapies and the next time I went to the neurologist, she was very surprised because my Parkinson’s was only on the one side. I’m on less than half the medication I was at my worst. I’m almost to the point to where the side effects from the medicine is worse than the disease.

The number one thing you have to realize is that your life is not over, just different. I believe they will never cure PD if medicine doesn’t help with the mental aspects. You need to meditate, Wim Hof breathing works for me the best. It’s powerful. You need to control your thoughts and block out the future. They might cure Parkinson’s tomorrow, or you might get hit by a bus. All that worry was for the nothing. Live in the moment.

B2 is critical for me. I can’t believe it’s been 20 years ago, doctor Coimbra had so much success with plain old riboflavin and elimination of red meat. People discredit him because there’s no money in it. Why hasn’t someone tried to duplicate the study. I have low riboflavin status and ate a ton of red meat. You can read my previous post on b2.

I take the top six supplements sited in the study, including others. I also take Restore Gold, which helps a lot with my OCD because of the NAC.

Before being diagnosed with Parkinson’s, I drank way too much diet soda. I’m sure that artificial sweetener isn’t good for your brain so you need to stop. I occasionally have a regular soda, but not often. Sugar isn’t good for the brain. It’s not a hard fast rule, but I would try to limit it as much you can. Make sugar a treat not a regular thing to eat.

Atophogy is key to fighting Parkinson’s. Fasting is one of the best ways to reach atophogy. Midnight snacks are a no-no. I think everyone who has Parkinson’s should practice intermittent fasting. At least 16 hrs of not eating. Its not that hard when you get used to it. Once you get better at it, you can go longer periods of time without food. I am currently on day four of a five day fast only water and coffee. Honestly, I don’t feel hungry. Just very weak. However, my mental clarity is amazing. My sense of smell keeps getting better and better.

I also invested in a sauna I do every night. It’s proven that it puts the body into Atophogy as well. A large study of people who were in the sauna at least four times a week at least 175°F for 19 minutes. had an all cause mortality drop of almost 50%. The likelihood of getting a neurodegenerative disease was like 65 or 70% reduction. They did the studies in Finland because everyone has sauna as part of their culture. It’s also very effective anti-depressant. One session had an anti-depressant effect the last six weeks.

The best type of exercise for Parkinson’s is high intensity, interval training. It also happens to be the best way to reach Atophogy. Is that a coincidence? Why aren’t doctors stressing the importance of fasting? I haven’t read the studies but I lift weights one day and do HIT the next. I might take one day off a week.

I also do red light therapy on my head. I got my device from Australia, called the coronet. Well red makes it. I think it’s worth the money and it’s super easy to do. There’s also a nasal attachment that I use. it’s helped tremendously with my sleep.

The very best advice I’ve ever heard for those who have Parkinson’s is to live your life like you don’t have it. I find that when I ignore the symptoms, they don’t bother me near as much. In my head, I was always so embarrassed of my symptoms, but now I don’t really give a shit. Without even knowing, I’ve been an inspiration to those who are struggling. When I see Michael J Fox, I don’t feel his symptoms are embarrassing.I just feel super inspired for a guy who’s dealing with this stuff and still pressing on.

Again, I’m not an expert on anybody’s Parkinson’s except my own. i’m not saying what I do would work for everybody, but it could work for some. I’ve went through hell guinea pig in myself, so maybe somebody else doesn’t have to do it the same thing. If anybody ever wanted to talk, message me and I can give you my phone number.

pubmed.ncbi.nlm.nih.gov/145...

mdpi-res.com/d_attachment/n...

[pdpatient]

So much wisdom at such a young age and demonstration of resilience and understanding. I applaud you. Keep at it.

[Trailerlove]

great advice.. thank you

[jeeves19]

a brilliant post. Congratulations 🙏😊

[jeeves19]

what apart from Restore Gold would the most important supplements be?

[38yroldmale in reply to jeeves19]

For me, I believe B2. High dose B2 (no side effects) can overcome my severe form of MTHFR which causes detox issues and is unable to covert Folic Acid into folate. It can actually inhibit the folate pathway. White flour became enriched with folic acid in the late 90’s in USA. Folate is vital in the production of blood, so I was anemic for most of my adult life. Less blood=Less Blood to brain.

Ginko Bilobo and NAD+ are my favorites and happen to be the top of the attached list. NAD+ is crucial for aging, it’s in every cell of your body. Cells use NAD+ to work and it gradually goes down when you age. I supplement with NAD+ and its precursor, Tru Niagen. Doctors used with brand in studies but it’s really expensive. Ginko is allegedly vital in blood flow in the brain. It relaxes the blood vessels in the brain for improved blood flow. No side effects on either.

[Fed1000 in reply to 38yroldmale]

When you talk about high doses of B2, haw much do you mean?

[38yroldmale in reply to Fed1000]

Well I take 30 mg every 8 hrs. Anymore doesn’t help or hurt.

[jeeves19 in reply to 38yroldmale]

That Tru Niagen is terribly expensive though

[38yroldmale in reply to jeeves19]

Ya, I’m not convinced it’s worth it. NAD+ and a niacin supplement might work as well and not break the bank

[jeeves19 in reply to 38yroldmale]

Re autophagy. I’m not sure what to think: in theory it ought to work but there’s a guy on here (Xenos) who fasted for 36 hours twice a week for 4/5 weeks and didn’t feel any symptomatic relief. Should he have done or would it merely delay/stop progression?

[38yroldmale in reply to jeeves19]

autography only starts at 16 hrs, barely. The longer you go, the more it ramps up. I’m a rookie to fasting but I noticed benefit day 4-5. 36 hrs would work but it’s, in my opinion not near enough time. If you fasted like that for months, I bet you would see benefit. The problem is that it would be so gradual you may not notice. 18 hrs-48 hrs are by far the worse time. Day 3 started 60 ish hrs in I felt a little better. Almost 0 hungry. Day 4 was outstanding! Was weak but felt amazing. Same day 5. My wife wanted me to stop by or I would’ve kept going. If you can get past day two, it’s much easier.

I look at Atophogy as a long-term slow process that can limit or stop the progression of Parkinson’s. A personal note I’ve always slept walk, my whole life even as a child. I had some stressful experiences when I was 20 and began sleepwalking and eating. I know it’s weird as hell so the last 20 years I’ve not ever reached autophagy. Like mentioned before they did this to mice and they all died of neurodegenerative disease. I’m not simplifying it just to that but I think it’s a massive part of my Parkinson’s Maybe the biggest? Did are hunter gatherer ancestors eat three meals a day? They probably ate once a day if at all. It does take a lot of will power, but I think most people who have Parkinson’s have willpower, maybe too much willpower in my case because I took everything to the extreme. Like my diagnosis.

[jeeves19 in reply to 38yroldmale]

You have outstanding willpower my friend. Lots of us talk about fasting but you actually make it happen. Congratulations 🥳.

[jeeves19]

but then again, many people eat lots of beef and sugar and are quite healthy?

[rebtar in reply to jeeves19]

Genes, toxic exposures, traumas etc. Each person is different. 😘

[Wecanwinthis]

my hubby was diagnosed 2.5 years ago at the age of 52. In the last 6 months his regression has been overwhelming. He has no quality of life and neither do I and the kids. We finally broke and decided to try meds. He is hating it. Says he feels worse. But the alternative is not great either. We also live in Israel and the stress from the war and having our kids on the front lines fighting these crazy monsters and having rockets rain down on us has effected him so badly. We’ve tried so many things. I would love to connect and bounce ideas and give each other strength.

[faridaro in reply to Wecanwinthis]

So sorry to hear about your husband's fast progression. The stress can exacerbate symptoms of PD and my heart goes out to you. I've been recently traumatized from losing my youngest son to cancer and my PD symptoms rapidly got much worse.

The best thing we can do is to live in a present moment which is easier said than done, but that's what the art of living seems to be about. Wishing you and your family protection from harm and perfect shalom.

[Gioc in reply to Wecanwinthis]

I'm very sorry about everything, if you started using L dopa maybe you should start using vitamin B1. More information can be found on this forum or by reading the book by Dap1948 . At 53, I too thought I was physically destroyed but then with vitamin B1 and Ldopa I continued to work for several years and to be the caregiver of my visually impaired wife. I am sure that the diplomacies will do their job and the terrorists will be marginalized and condemned, just as soon there will be an effective cure for PD so that you and your family will be united again and what was beautiful will be even more so.

Shalom

[28028pdralph]

Hi Great to hear some positivity, I was diagnosed in Jan this year, started getting tremors in Mar 2021 after my first covid jab but took 2 years to confirm I had PD, absolutely broken, I have always exercised and weight trained, non smoker, always been into health and fitness so cannot believe my diagnoses. I heard about B2 from Dr berg YouTube, also following B1 protocol which Daphne Bryan talks about, plus taking all sorts of supplements, red light therapy and fast most days for 16hrs. Only taking Rasagiline (not sure this is doing anything) and propranolol for the tremor which is helping. I think I need to learn to accept this and live for today but not sure how to change my mindset and stop crying every time the focus is on me and my diagnoses.

[jeeves19 in reply to 28028pdralph]

I’ll tell you how to stop crying: imagine that you’ve had dbs and are on 800 mg of cl as well every day?

[pdpatient in reply to jeeves19]

Stop beating yourself up, Jeeves. You took a bold step and last I heard, it takes a few months to get to a good place. Hang in there.

Also, the weather is not cooperating. It's 90 degrees Fahrenheit in California tonight in late October. Go figure. I think the weather with climate change make our future uncomfortable way more than Parkinson's will.

[jeeves19 in reply to pdpatient]

Thanks PD

[Esperanto in reply to 28028pdralph]

Hi Ralph, it seems to me that you are already doing everything you can to keep your symptoms in check as much as possible. If that no longer works and you consciously don't take carbidopa / levodopa as a PD medication, you could (re)consider this. It is not a cure, but it is a medication that helps improve your quality and enjoyment of life. At this stage, you can probably take full advantage of it. Don't deny yourself that!

[38yroldmale in reply to 28028pdralph]

Try Wim Hof breathing. It’s life changing. Seriously, complex problems can have simple solutions. It’s slows your mind down. I was there, first dx and my mind wouldn’t shut off. During breathing retention phase try to think of nothing, focus on something boring in the room. Don’t think about breathing or you won’t hold your breath as long. Wim Hof is a legend. He has an app with breathing that I use but try YouTube to see if you like it. Be patient with yourself, you’re not gonna get good at it for weeks possibly months. I actually do a cold plunge, but cold showers work too. Good luck

[Bolt_Upright]

Great post. Thank you for sharing and happy you may have stopped progression. Are you still taking D?

[38yroldmale in reply to Bolt_Upright]

No, I took my high dose D during the time I got worse when I was off basically every thing else.

[Bolt_Upright in reply to 38yroldmale]

Thanks!

[Fed1000]

Hi, in my opinion there must be hope for everyone, new and old diagnosed and this blog must be the catalyst for every experience from which lessons can be drawn to help you feel better, shared with your doctor, of course. Your nice post goes in this direction, in fact there are many information contained from which to draw inspiration. Thank you very much

[nabus]

Great post. Your positivity is infectious. Thanks!

[Smittybear7]

Great post. Thanks

[Erniediaz1018]

Thank you great post very encouraging God bless.

[AndyMu72]

Absolutely love this post - thank you🙏🏼. 2.5 years in from dx and so much of this resonates. My experience backs up a fair amount of yours. With HIIT & running, nutritional changes (largely binning dairy & sugar), supplements (Mg, Ginko biloba, Zinc, C, D, B complex & high dose B1), meditation, time in the hills - I largely feel great.

Always looking to learn and adjust so gonna look into high dose B2.

Only real issues for me lately have been anxiety and occasional speech problems. Arranging to see Speech therapist. Considering Lithium Orotate for the anxiety! Any thoughts on this welcome. Meditation definitely helps here but keen to try anything else that may give even more help.

The mindset is massive - I think your attitude is great. Keeping forward momentum helps me plough through the darker days.

Thanks for sharing your hard earned wisdom🙏🏼

[Godiv]

This is great information! Thank you for taking time to do this.

K

[robinson621]

Thank you, I want to travel again, I put everything on hold because cause of fear.

[Coletteflint]

Thank you. This is the single most helpful thing I have read since being diagnosed 4 years ago.

After reading your post I decided to try intermittent fasting / autophagy - eating all of my meals within an 8 hour window. What did I have to lose? I have been doing this for 3 weeks now and the improvement in my symptoms ( tremor and stiffness ) is unbelievable. I am still taking my meds (Madopar 3 x 100mg and Rasagiline). I used to start feeling shaky an hour before my next dose of Madopar and for about half an hour after taking it . This off time stopped almost immediately I started fasting and seems to have just stopped altogether. Now I only experience tremor when I wake up in the morning before taking my meds. My energy levels are higher and I am really enjoying my food!

I will certainly continue with the fasting and keep my fingers crossed that the improvement in my symptoms is maintained. Thank you again. Wishing you all the very best.

[38yroldmale in reply to Coletteflint]

Thank you so much for your comment. I really needed it. I am constantly second guessing myself. My form is highly physiological and knowing someone might benefit from my self induced Guinea piggy suffering makes it all worth it. I believe I’m being directed by some higher power. I’m only 43 and I feel like I’ve slowed my progression if not stopped it. I hate having others suffer. Thank you! Good luck! Look at your b2 If you haven’t yet.

[Gioc in reply to 38yroldmale]

38yroldmale IMHO your protocol is very good for stimulating daily autophagy. I believe autophagy has a start, increase in intensity and a decline, this means time. The time or hours in which ideal conditions for autophagy must be maintained. My opinion is that eight hours of fasting without other physical stress is a minimum time as long as you don't overdo it with food afterwards.